By Nancy Koeneman
Madonna Harrington Meyer and the other members of the Alzheimer's Association East Central Illinois chapter believed they needed to do something more.
The chapter helped those with Alzheimer's disease (and other related dementia) and their families in many ways -- providing information about the disease and referrals to those who could provide assistance. But there was something more to be done.
Alzheimer's disease is a progressive, irreversible neurological disorder. Symptoms include gradual memory loss, impairment of judgment, disorientation, personality change, difficulty in learning and loss of language skills. It strikes people who are usually older than 65, but may occur in people as young as 40 or 50.
Meyer, a professor of sociology, helped formulate an ideal way to meet the needs of people who care for a family member with Alzheimer's disease. The concept was the Alzheimer's Respite Corps (ARC), in which a volunteer would be matched with households with an Alzheimer's victim. Each week, the volunteer would come to the home and give a three-hour break to the caregiver.
Harrington had something even more vital to offer the fledgling program -- an ideal pool of volunteers to get the program rolling. Because her classes' subject matter dealt with older adults and aging, she had required students spend some time as volunteers with aging adults. ARC became one of several options for the volunteer work.
Setting up the program took a little research of similar programs available across the country.
"We found some that charged for service," Meyer said. "Some were very small and really offered token respite. Many provided service, but there was no connection between the volunteer and family. It wasn't the same person coming to the home each time."
The local Alzheimer's chapter members and board began to draft how their respite corps would work. They set a few ground rules: The service would be free, volunteers would commit to a year and work with the same family throughout and there would be enough volunteers to provide regular service to as many people as need respite.
"We started developing the program [in the spring of 1994] and created the entire training program, giving information about the disease, behaviors of people with the disease and care giving," Meyer said. "We had to set up how we would recruit volunteers, find the families who need service, and [set up] a monitoring program that checked on the volunteer and family to make sure things were going well."
Once all the pieces were in place, the program started up in October 1994. Feedback was immediate, Harrington said.
Caregivers who were getting a break from taking care of the family member were impressed by the volunteers and grateful for a chance to socialize, run errands,or simply get away. Volunteers began creating good ties with the family they visited each week.
"I think some of them were surprised at how much they got [emotionally] attached," Meyer said.
After two-plus years, the program is gaining momentum and national recognition, becoming a model for Alzheimer's chapters across the United States. Meyer hopes to generate grant dollars that will allow them to develop materials and distribute them so that it can serve as a pilot for other programs. The ARC committee has hired a part-time director, Eric Haugen, to oversee the day-to-day needs of the program, including recruiting and training volunteers, enrolling families, monitoring the match-ups, outreach and publicity.
Harrington, the founding director, is now serving as an ARC committee member. Lee Crandall, professor and head of the community health department at the UI, is now the chairman of the ARC board.
Volunteers are recruited throughout Champaign County, but most of them are still students from the UI.
"When the program started, Madonna tapped the pool of volunteers available in the university system," Haugen said. "It just seemed like a very obvious resource we needed to tap. They are still the largest part of our volunteers, as much as we try to get community members involved. And the students are long-lasting and hardworking. They're wonderful."
ARC is connected to the UI community in a number of ways. Many of the Alzheimer's chapter members or ARC committee members are faculty members, retired faculty members or the spouse of a faculty member. And many of those coming to ARC for help are similarly linked.
"I think in part [the connection] is because ARC started here," Crandall said. The other reason for such strong involvement by people from the UI is that the university environment encourages involvement like this, he said.
Michelle Kesterke, a UI graduate student who served as an ARC volunteer while she was an undergraduate, found she got more than the required volunteer experience.
"I gained a second family," Kesterke said. "Even though I'm not volunteering anymore, I still go see the family."
"I also learned a lot about Alzheimer's and the process [of the disease]," she said.
Crandall, who concedes he's still new to his position as chairman of ARC, said he immediately recognized how ARC fills an important gap in health care.
"And it's something as simple as three hours of relief to a caregiver," he said.
ARC is now looking to expand its services to outlying areas and rural communities. "We've had some success in Ford County," Crandall said.
Yet ARC is butting up against an unusual problem. It has little difficulty recruiting volunteers, but finds it hard to enroll families that need its services.
"People don't like to talk about this [Alzheimer's] happening in their families," Meyer said. "This is a very private disease."
Caregivers also might be reluctant to have a stranger come into their homes and care for a loved one, and often have a problem with the idea of someone else taking care of a spouse or a parent, she said.
People also think they need to handle this kind of situation -- a family member with Alzheimer's -- by themselves, Haugen said.
"A lot of caregivers think it's too soon to enroll in the program, that they should save it for someone who really needs it. They don't even know they are the ones who need it most," Haugen said. "We take referrals [of caregivers who need ARC] from a large spectrum of people -- health care professionals, people affiliated through the [Alzheimer's] chapter, other resources in the community. But sometimes we have to pursue the family with informational mailings or meetings. They find it difficult to take other people into their homes."
It sometimes takes some reassurance, Meyer said.
"We have to let them know it's a free, discreet, full-year commitment and it's OK to let someone else come in and take a few hours for yourself," she said.
Anyone who would like to volunteer, provide support to ARC or knows of someone who might need ARC services should call the ARC office at 351-1726.